NICE:MISDIAGNOSED FOR 20 YEARS

“It definitely wouldn’t have been this complicated... I definitely wouldn’t have developed cirrhosis, I wouldn’t have encephalopathy, the hemorrhaging that I had.”

Elenice da Cruz de Castro, known by her friends and family as Nice, resides with her daughter and husband along an uphill path in São Gonçalo, a city just to the east of Rio de Janeiro. On a weekend afternoon, the base of the hill is noisy with the commotion of people and music. Uphill, Nice’s house is quieter, with a peace disturbed only by the occasional cuckoos of her rooster and shouts from neighbors. From her rooftop, you can see the buildings and streets of the city that lie between her hill and the one opposite.

Nice is living with hepatitis C, a disease she contracted in 1984. She rarely leaves the house, and when she does it is usually to see the doctor. She passes much of her time working on arts and crafts, many of which she creates with various objects in the house. She makes a decorative box by tearing apart thin layers of paper napkins, cutting out their floral designs and pasting them onto pieces of wood. She animates a teal picture frame with glued bits of white eggshells.

Eleniceda Cruz de Castro, age 67, lives in São Gonçalo, Rio de Janeiro. She is a Hepatitis C patient who has chronic liver cirrhosis, only treatable with a liver transplant.

She has been married to her husband Jayme for 50 years. They have three children and one of the daughters Vera lives with them.

In 1990, she started suffering from ascites - her stomach swelled up with fluid for two to three days. This happened to her every year.

In 1996, she went to go see a gastroenterologist, who had no solution for her. She changed her diet but the painful ascites still came back every year, making her very weak.

She became forgetful and confused, walking around her neighborhood without proper consciousness. She was suffering from encephalopathy, a disorder in the brain when the liver cannot function correctly – one of the symptoms of Hepatitis C.

At Hospital Antonio Pedro, she received the news that her Hepatitis C was in the chronic stage, and her liver would not be able to take the interferon treatment.

She believes that if the public health doctors had examined her more carefully and diagnosed her much earlier, she would not have developed chronic liver cirrhosis.

She receives most of the information on Hepatitis C from the support group Amarantes. How to live with it on a daily basis and the consequences of the disease.

She used to love to go out and be active, but now she feels very limited in her home. She passes the time doing crafts.

Most of the time, she is overcome by fatigue. She must muster up the strength to wash and cook rice.

Her only option for recovery is a liver transplant at the federal hospital St. Francis Xavier.

In 1984, Nice was in a terrible car accident. Her left leg was badly damaged, and she needed a large blood transfusion. Since donated blood wasn’t screened for hepatitis C until the early 1990s, she believes this is how she contracted the disease. She now has chronic liver cirrhosis, which can only be treated with a liver transplant. Since October 2013, she has been waiting for a liver.

The effects of Nice’s hepatitis C started to appear in 1990. They began with light indigestion, but grew progressively worse when she had her first ascite, a symptom of cirrhosis that causes the stomach to swell with liquid and leaves the patient pale and weak for several days. She made drastic changes in her diet to try to solve the problem, but the ascites returned every one to two years. This erratic appearance and disappearance of severe symptoms became the status quo for Nice. During her better days, a doctor once told her, “The virus is asleep, but sometimes it wakes up and goes for a stroll with its buddies through your blood system.”

For years, Nice’s hepatitis C went undiagnosed as she consulted multiple municipal-level gastroenterologists in São Gonçalo. They were unable to recognize her symptoms as indicators of the disease and often misdiagnosed the problem as being induced from the antibiotics she took after her car accident or from an inflated gallbladder. Nothing they prescribed prevented the ascites from coming back, and doctor after doctor gave her incorrect advice. “When I saw that it wasn’t working with one [gastroenterologist], I’d jump on to the next one,” says Nice. “But all of them would say the same thing. No one specifically mentioned hepatitis.”

Nice also eventually developed liver-induced encephalopathy, which obstructs the brain from properly functioning. She became increasingly forgetful and confused. While looking at mundane objects, everyday items like forks and plates, she could not recall what purpose they served despite knowing what they were. After having a brain scan analyzed by a geriatrician, Nice was told that millions of neurons had died in a small region of the right side of her brain – causing permanent damage. She underwent treatment to recover as much function as possible, but for a number of years she continued to suffer from the encephalopathy, getting lost in her own neighborhood and being unable to remember the names of people she had known for years. For a while, her daughter had to bathe her and assist her with lifting objects such as eating utensils.

The consequences of the car accident, contracting hepatitis C, and the ignorance of the doctors she saw not only resulted in a loss of physical health, but they also led to a loss in lifestyle. She used to love going for long, outdoor walks at places like the Jardim Botânico in Rio de Janeiro. She also used to dance to pagode, a style of samba. But now her legs do not feel strong enough to do either of these things. Her condition also made it difficult to work, and she had to take a seven-year leave from her cleaning services job until she retired. The stress of dealing with these changes led to insomnia, heightened sensitivity and depression.

Nice gradually recovered from the symptoms of her encephalopathy and is now much better at coping with her health problems. This has allowed her to gather the strength to attend family events, such as weddings and baby showers. And although Nice doesn’t often leave home, she did not let the disease prevent her from visiting her sister in the southern city of Curitiba and then in the state of Pernambuco, more than two thousand kilometers to the northeast. “Your day-to-day routine changes, and you have to accept it,” says Nice. “But it doesn’t mean limiting yourself to a corner and saying, ‘Oh, I’m sick, so this is the way it is’. No, that's not how it has to be. You have to habituate yourself, knowing that you are alive and that life goes on.”

One day, in 2006, Nice suffered from a particularly harsh ascite. In a matter of hours, her skin began to look yellow, she felt nauseous and her memory was failing her. Rather than returning to one of the municipal gastroenterologists, Nice decided to spend 50 reais to receive a consultation at a private clinic. The doctor there sent her to Antônio Pedro, a federal hospital in Niterói where she was told she had hepatitis C and irreversible liver cirrhosis. Twenty two years after contracting it, Nice could finally identify the disease that had caused her so much pain.

With the hepatitis C in its chronic stage, Nice could not begin the standard treatment of interferon to try to cure it. She did start receiving checkups and treatments at federal hospitals that are much better equipped than municipal health centers. To help with her ascites, she began taking diuretics to increase the excretion of water from her body. Although the diuretics help, they leave her system feeling unbalanced. “You go to sleep well,” she says, “But you wake up feeling just awful.”

Many doctors have applauded Nice for how she has managed to fight the disease over the years, essentially on her own initiative and persistence. She would have cellphone pictures taken of her swollen abdomen to emphasize her case, and she often had to press doctors to reveal the full details of any illness or treatment because what they said upfront was often unclear. Nice was fortunate to finally encounter doctors who were responsive to her. “After all that I went through, I can tell you now that I was lucky, because all the doors I have knocked on have opened themselves to me,” says Nice. “But there are people who aren’t so fortunate. I don't know if it’s luck, the way of approaching the problem, or the way you talk to people. I only know what’s worked for me.”

Nice also received a great deal of care and support from her friends and family. Her daughters were integral to her management of hepatitis C as they took care of messy details and appealed to the doctors on her behalf. And soon after she received her accurate diagnosis, Nice joined Grupo Amarantes. Amarantes provides her with both information on the disease and a support network of people facing similar challenges. “If one of us gets sicker, group members will call and cheer us up and visit us at home,” says Nice.

A liver transplant is now Nice’s only option. To learn the specifics of the transplant process, she had to continuously ask medical professionals until she was given an answer. While learning that there is a high degree of uncertainty associated with the operation and a chance that the surgery itself could cause hemorrhaging both during and after the procedure, a successful surgery also means a prolonged life.

Despite the risks, Nice is confident that she will be part of the majority of patients who receive successful liver transplants. She is just waiting for a phone call telling her that a healthy liver is ready. She already has one great-grandson, but that’s not enough. After her grandsons get married and have their own kids, she takes it as a point of pride that she will be able to witness an entire fourth generation of her family.